The UK-Irish Consortium for ageing well with a lifelong disability: Priorities, perspectives and opportunities

随着世界各地的预期寿命持续上升，确保老年人长寿和健康的生活是一个全球优先事项。英国和爱尔兰都致力于实现这一目标，资助研究，帮助人们保持福祉，独立和健康，因为他们的年龄。然而，为了确保所有老年人都能健康长寿，我们需要确定和解决一些人口可能没有同样机会老去的不平等问题。遭受社会和健康不平等待遇的人口之一是终身残疾者。终身残疾始于童年，包括脑瘫、智力残疾、自闭症谱系障碍、视力障碍和听力障碍。终身残疾人的寿命比以往任何时候都长，他们是一个重要但往往被遗忘的老龄化人口。她们在健康老龄化研究和政策中的代表性不足。大多数关于健康老龄化的研究和政策都强调，我们需要避免老龄化导致残疾，而关于残疾人健康老龄化的研究却少得多，有必要开展研究，帮助解决和减少终身残疾人面临的不平等，以帮助他们健康老龄化。这项网络赠款将使我们能够汇集研究人员，临床医生和主要利益相关者来开展这项研究。为了吸引研究人员，临床医生和利益相关者，我们将开展一系列网络和发展活动：一个公众参与项目，两个研究务虚会和一个范围审查。这些参与者将被邀请加入英国-爱尔兰终身残疾人健康老龄化联盟，以调动专业知识并推动研究向前发展。公众参与项目将要求终身残疾人提交一份媒体材料，在网上画廊展示健康老龄化对他们的意义。我们还将要求终身残疾的人和其他利益相关者告诉我们他们对老龄化的研究重点。确定的首要研究重点将在爱尔兰和英国举行的两次研究务虚会上讨论和制定。研究人员、临床医生和利益相关者将参加务虚会，讨论和发展未来研究项目的想法，并确定研究资金的机会。赠款申请人还将审查目前的证据基础，以绘制目前关于终身残疾的老龄化研究的地图。作为本次审查的一部分，他们还将总结现有的已发表的研究重点，以了解终身残疾老年人的研究重点的更广泛的景观。通过这样做，他们将能够确定终身残疾人希望优先考虑的研究，以及实际完成的研究。这些网络和发展活动的成果将通过公开访问的联盟网站，由主要研究人员提供的公开讲座和出版的范围审查来分享。我们将把所有的研究结果汇总成一份总结报告，其中将列出通过该网络资助开发的未来研究的想法。这些活动和成果将有助于以以下有意义的方式发展研究：1）通过与终身残疾人合作，我们可以确定和发展他们的研究重点，并通过审查和巩固以前的研究，我们可以了解需要进一步研究的地方（优先事项）。通过将研究人员、临床医生和关键利益相关者聚集在一起，我们将从一系列专家那里获得关于如何以及在何处开展研究的见解（观点）。通过发展英国-爱尔兰终身残疾老龄化联盟，我们将拥有推动这项研究向前发展所需的专业知识（机会）。

As life expectancy across the world continues to rise, ensuring that older adults live long and healthy lives is a global priority. Both the UK and Ireland have committed to achieving this objective by funding research that helps people maintain wellbeing, independence and health as they age. However, to ensure that all older adults live long and healthy lives, we need to identify and address inequalities where some populations may not have the same opportunities to age well. One such population who experience social and health inequalities are people living with lifelong disabilities. Lifelong disabilities have their onset in childhood and include cerebral palsy, intellectual disability, autism spectrum disorder, visual impairment and hearing impairment. People with lifelong disabilities are living longer than even before, and represent an important but often forgotten ageing population. They have been under-represented in research and policies on healthy ageing. Most research and policy on healthy ageing emphasises that we need to avoid ageing into disability, whereas there is significantly less research about ageing well with a disability.There is a need to develop research that will help address and reduce the inequalities faced by people living with lifelong disabilities in order to help them age well. This networking grant will allow us to bring together researchers, clinicians and key stakeholders to develop this research. To engage researchers, clinicians and stakeholders we will undertake a series of networking and development activities: a public engagement project, two research retreats, and a scoping review. These participants will be invited to join the UK-Irish consortium for ageing well with a lifelong disability to mobilise expertise and drive research forward.The public engagement project will involve asking people with a lifelong disability to submit a piece of media to display on an online gallery about what ageing well means to them. We will also ask people with a lifelong disability and other stakeholders to tell us their research priorities for ageing well. The top research priorities identified will be discussed and developed at two research retreats to be held in Ireland and the UK. The retreats will involve researchers, clinicians and stakeholders coming together to discuss and develop the ideas for future research projects and identify opportunities for research funding.The grant applicants will also review the current evidence-base to map current research on ageing well with a lifelong disability. As part of this review they will also summarise existing published research priorities to understand the broader landscape of research priorities for people ageing with a lifelong disability. By doing this they will be able to identify what research people with a lifelong disability want prioritised, and what research has actually been done.The outcomes of these networking and development activities will be shared through a publicly accessible consortium website, public lectures delivered by the principal investigators and a published scoping review. We will consolidate all findings into a summary report that will lay out the ideas for future research that were developed through this networking grant.The activities and outcomes will help develop research in the following meaningful ways:1.) By working with people with a lifelong disability we can identify and develop their research priorities, and by reviewing and consolidating previous research we can understand where further research is needed (priorities).2.) By bringing together researchers, clinicians and key stakeholders we will gain insights from a range of experts about how, and where, to develop research (perspectives).3.) By developing the UK-Irish consortium for ageing well with a lifelong disability we will have the expertise needed to drive this research forward (opportunities).